Thursday, May 10, 2012

Most children are sponges as they grow up and their parents are the water they absorb constantly. They take in that water and imitate it, remember it or adjust it to fit their personality, but they are always absorbing, absorbing, absorbing. But what if your child didn't observe, didn't absorb, just kind of floated along in the water that is their parents?

"Your son is a cork."

There it is. Who would think that hearing something like that would bring so much understanding, but it did, because she was absolutely right, he is a cork-The Corkstin.

A diagnosis of any kind is bittersweet: bitter, because no parent wants to hear that their child suffers with anything, and sweet because no parent wants suffering to continue, when it can be eased with a diagnosis. That is where we are at, Diagnosis: Aspergers Syndrome.

I can't say it was a huge shock, it is something we have suspected for quite some time, really since the first day we brought The Stin home. He was a hand flapper and then he developed tics. At first we thought he might have Tourettes Syndrome, but the tics came and went and changed, so we decided to just wait and see if they were due to anxiety, I mean he went through so much in his first 4 years of life. We actually overlooked a lot of the symptoms due to this. The Stin was essentially a 2-year old when he came to live with us at 4 1/2-years old. He wore 2T clothes, didn't know his ABC's and had a severe speech impediment. But after a short time he educationally caught up and started to excel and he went through a growth spurt that put infants to shame, I'm talking like 6 inches in 3 months. So the social immaturity we chalked up to just taking a backseat to all the other things he had to catch up on. But the signs were there.

Many signs you see with Aspie's are actually overlooked as high intelligence. Justin had a vocabulary like an adult and spoke in a very formal manner for years. Most adults thought it was impressive or cute, we were just so happy that he overcame his speech issue and seemed to be really taking to adult conversations. Then there is the high scoring on standardized tests, he was reading at a 7th grade level in 3rd grade and has tested at an accelerated level in Math almost every year. But school is structured and follows a strict routine, and for a child with Aspergers who thrives on routine, it's no surprise that he would excel in that environment. It's not The Stin's intelligence that has ever been in question, it is his social abilities-or lack thereof.

We nicknamed The Stin "Literal Larry," very early on based on his very literal interpretation of everything he saw or anything that was said. Sarcasm is virtually non-existent to him and everything is viewed as black or white, The Stin sees or hears no gray. In some ways this appeared to be great, with teaching rules, but as he has gotten older and the ability to understand exceptions becomes more prevalent with friends, this has become a problem. He is becoming known as a bit of a tattler, not for any other reason than knowing that a teacher should be told when a rule is broken. But he is now experiencing situations that don't need teacher involvement, just talking it out with a friend. I am constantly having to explain commercials and the underlying meaning-"No Justin, they didn't really get an elephant to sit on that woman's chest. They did that with computers and it's supposed to help emphasis how heavy her chest feels when she breathes. It's LIKE having an elephant sitting on you." He absolutely cannot discern if someone is joking, annoyed or just being mean, and the problem is he usually defaults to them just joking around and isn't grasping that some kids are starting to be mean. This is a blessing right now, but I worry about his naivety as he gets older. If he does have a friend over we usually have to go into a debriefing mode after the child leaves. Going over the actions of The Stin-like standing in the dining room, just spinning- and the reactions of the friend- looking at him oddly and asking "What are you doing?". It's a delicate balance of being blunt about situations, but not sounding condescending. "I know that you were trying to be funny and think spinning is fun, but if your friend isn't laughing and doesn't join in, you need to realize that he doesn't find it humorous or fun, so maybe you should stop and move on to something you both enjoy doing."

The Don and I sat down with him, not too long ago, to talk about being a good friend. Because The Stin lives in his own Aspergian world and even though he wants friends, he struggles with being a good friend. It took him 2 years to learn the 10 kids on his soccer team's names. He never inquires or remembers much of anything about the few kids he has had come over to play. So we decided to start spelling out for him the basics of friendship. Give and take, asking questions and The Don brought up that sometimes you have to do things your friends want to do, even if you don't really want to-simply meaning playing basketball instead of football one day. However, knowing the literal mind our son has, I immediately had to explain to him that he is not to do anything he knows is wrong, just because his friend might want to. This was crucial, because it is very likely that if a friend told him he wanted the Stin to steal him a pack of gum, Justin would assume from our conversation that he should do that for his friend. And this is how explanations go right now, making sure we have covered all bases because The Stin currently cannot apply simple thoughts to a broader picture, especially if an exception might need to be made.

It's been a long road that few can really understand. We've been in parenting over-drive for six years. We've been told that he doesn't have Aspergers because he looks at people when they talk to him...why yes he does, but that took three painfully long years of constant repetition, consequences, pulling-out-my-hair, and crying to get him to this point. But if you pay attention, he doesn't really look at you, not to communicate or pick up on your facial cues, he does it because he knows he's supposed to and that is the only reason. He has adapted or assimilated to certain situations because he was able to learn what to do from consistently being told to do so.

The problem is that because of this assimilation, we have come across a lot of scrutiny and push back. I could hear his pediatrician roll his eyes at me when I called the office the first time to discuss with him my suspicions, friends have been hesitant, family members insist he is just immature, his school reminds me of his high scores on achievement tests. Everyone seems to have an opinion and it doesn't include high-functioning autism or Aspergers Syndrome. But we have known, in our heart of hearts, that this is what we are dealing with. We see the struggles others don't see, can't see or refuse to see. We know because while The Stin has been floating around, we have been drowning in all the water it takes to get him to understand a small piece of information that comes naturally, to most people.

This has been both an overwhelming and underwhelming experience. Overwhelming because we just learned our son has Aspergers Syndrome, which is still being understood in the medical field and resources are out there, but limited. Aspergers comes up as a misspelling in this blog when I spell check. Underwhelming because it seems like a diagnosis was handed to us and now we are left to dig in our heels and find the resources needed to help him on our own. I thought the most overwhelming part would be all the information to sort through, and I'm sure that will come as I do more and more research, but it wasn't like a diagnosis for a well studied disorder, I wasn't given tons of information, paperwork, options, books, a clear plan of action, available treatments or even future appointments. I was simply sent an e-mail with a diagnosis and clarification on how it may affect his academic future, to help with obtaining an IEP through the schools, a couple websites/phone numbers and an "I'm here if you need anything else" and that was it.

So that is that and here we are. A little more informed, still pretty lost, but at least facing in a direction that I think is correct. I guess I had this naive thought that we would come out of the analysis/diagnosis with all the answers we needed to at least start helping The Stin in a more productive way, because we are starting to experience harder, more complicated situations and I am starting to feel more and more overwhelmed. But that isn't how it went, so now we go from here, our starting point. I'm slowly filtering through websites, finding resources and collecting information. I will say that this has also allowed me to start to breath a little bit more with The Stin. I found myself getting extremely frustrated and short-tempered with the constant repeating of myself. But now I have a better perspective on what we are dealing with and find it calming to remember this in those more difficult situations. I'm still trying to figure out what behaviors are due to Aspergers and which are due to him simply being an eleven-year old boy, but with time I'm hoping that will get easier.

This diagnosis seems like a life vest that has finally been thrown at us. As we put it on and catch our breath we will slowly start to rebuild our energy for the swim ahead. It will allow us to stay afloat as we plan out our course of action moving forward. As our confidence slowly grows and we get stronger we will, hopefully, someday be able to shed the life vest. We will never be able to completely get rid of it, because it will always be with us as long as we're in the water, but I'm hoping that we will get to a point where we can comfortably tread water on our own with our buoyant son, The Corkstin.